Welcome. UCLA-LIVESTRONGLIVESTRONG Survivorship Center of Excellence. Patricia A. Ganz, M.D. April 4, 2009

Transcription

1 Welcome UCLA-LIVESTRONGLIVESTRONG Survivorship Center of Excellence Third Annual Survivor Education Day Patricia A. Ganz, M.D. April 4, 2009

2 Thank You to Our Supporters Healthy Lives After Cancer Gift in Memory of Ann Fitzpatrick Alper

3 Overview of the Day Morning activities Plenary lectures Question & Answer Panel Lunch on the terrace with speakers Afternoon Breakout Sessions-choose 1 in each group (45 minute sessions) Group 1: young adult and childhood d survivors; male genitourinary cancers; techniques for coping with cancer; employment/legal issues; cognitive issues after cancer Group 2: hematologic cancer survivors; cancer as a chronic disease; integrative medicine/supplements; physical activity workshop

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5 Cancer Survivorship: a new challenge in delivering quality cancer care Patricia A. Ganz, M.D UCLA Schools of Medicine & Public Health Jonsson Comprehensive Cancer Center

6 Who are the Cancer Survivors? More than 1 in 3 Americans will be diagnosed with cancer in their lifetime 11.1 million Americans have a personal history of cancer; 3.6% of US population The number of cancer survivors will increase sharply during the next 25 yrs with aging of the population

7 Cancer Care Trajectory Start Here Treatment t With Intent to Cure Cancer-Free Survival Managed Chronic or Intermittent Disease Recurrence/ Second Cancer Diagnosis and Staging Treatment Failure Survivorship Care Palliative Treatment Death IOM, 2005

8 IOM Findings: Survivorship Care Survivorship care is a neglected phase of the cancer care trajectory Cancer recurrence, second cancers, and treatment late effects concern survivors Few guidelines on follow-up care Providers lack

9 IOM Findings: Survivorship Care Survivors may: be unaware of risk have no plan for follow-up Opportunities to intervene may be missed Cancer care is often not coordinated Models of

10 IOM Findings: Survivorship Care Chronic care model applies Essential care components Prevention Surveillance Intervention Coordination

11 Why is cancer different from other chronic diseases? Cancer treatment is. Complex Multi-modal Multi-disciplinary Toxic Expensive And often poorly coordinated Cancer treatment usually occurs in isolation from primary health care delivery

12 Why does cancer care present such a challenge? An average of 3 specialists/patient, with treatments across time and space outpatient, inpatient, specialized treatment facilities. limited communication among treating physicians, multiple medical records

13 Other Challenges Limited systematic study of the late effects of cancer therapy Follow-up care plans have been ad dhoc, with focus on surveillance for recurrence When should health promotion and chronic disease prevention become the focus?

14 Proposed Strategies to Address these Challenges Integrated, electronic medical records Patient navigators Consultation planning None of these strategies t are widely available for patients receiving active treatment! What happens when treatment ends?

15 Why do we need a survivorship care plan? To summarize and communicate what transpired during cancer treatment To describe known and potential late effects of cancer treatments, with expected time course To communicate to the survivor and other health care providers what has been done and what needs to be done in the future To promote a healthy lifestyle to prevent recurrence and reduce the risk of other comorbid conditions

16 Survivorship Care Plan flows from other IOM Recommendations Continuous healing relationships Customization based on needs and values Patient as the source of control Shared knowledge and free flow of information Evidence-based decision making Safety as a system property Need for transparency Anticipation of needs Decrease in waste Cooperation among physicians

17 Key Elements Included in Survivorship Care Plan Specific tissue diagnosis and stage Initial treatment plan and dates of treatment Toxicities during treatment Expected short- and long-term effects of RX Late toxicity monitoring needed Surveillance for recurrence or second cancer Who will take responsibility for survivorship care Psychosocial and vocational needs Recommended preventive behaviors/interventions

18 Where does the Survivorship Care Plan fit in the Chronic Care Model? Survivorship Care Plan Epping-Jordan, J E et al. Qual Saf Health Care 2004;13: Copyright 2004 BMJ Publishing Group Ltd.

19 What are the barriers to routine generation of a treatment summary and survivorship care plan? An expectation in some specialties and not others (e.g. radiation therapy vs. medical oncology) Lack of appreciation of the need and value added Lack of time/reimbursement Lack of awareness that survivors and primary care physicians need improved communication

20 ASCO s Efforts Pilot versions of treatment summary and care plans in QOPI practices : Development of a colon cancer adjuvant therapy template 2 pages in length, including treatment plan and summary ASCO colon cancer surveillance guideline attached Posted on ASCO website with multiple formats Incorporated into EHR vendor products

21 Colon Cancer Adjuvant Therapy Treatment Plan & Summary The Treatment Plan and Summary provide a brief record of major aspects of colon cancer adjuvant chemotherapy. This is not a complete patient history or comprehensive record of intended therapies. Provider name: Patient name: Patient DOB: ( / / ) Support contact name: Support contact relationship: Background Information Cancer detection: Screening Symptoms Incidental Site in colon: Right Transverse Left Sigmoid Age at diagnosis: Predisposing conditions: None Inflammatory bowel disease FAP HNPCC Family history: None 2 nd degree relative 1 st degree relative Multiple relatives Pre-op colonoscopy to cecum: Yes No Primary colon operation: Surgery type: Elective Emergent Stage: IIA IIB IIIA IIIB IIIC Number of lymph nodes removed: Notable pathology findings: Patient ID: Patient phone: Support contact phone: Other lesions: None Low risk polyps High risk polyps CEA pre- op: T stage: T1 T2 T3 T4 Date of surgery: ( / / ) CEA post-op: N stage: N0 N1 N2 Number of lymph nodes positive:

22 White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy Height: in/cm Pre-treatment weight: lb/kg Post-treatment weight: lb/kg Pre-treatment BSA: Name of regimen: Treatment on clinical trial: Yes No Start Date: ( / / ) End Date: ( / / ) Bio/Chemotherapy Drug Name Rou te Dose Schedule Dose reduction needed Number of cycles administered Yes % No Yes % No Yes % No Yes % No Possible side effects of this regimen: Hair loss Neuropathy Low blood count Fatigue Diarrhea Dehydration Nausea/Vomiting Other: Number of cycles containing oxaliplatin: Serious toxicities during treatment (list all): Hospitalization for toxicity during treatment: Yes No Reason for stopping adjuvant treatment: Disease status at end of treatment: No evidence of disease Possible recurrence Recurrence

23 ASCO s Efforts : 2008: Adjuvant breast cancer treatment plan and summary developed Iterative process; review by breast cancer experts and members of clinical practice committee Final review and approval by the Quality of Care Committee Formal process for further template development instituted 2008: Generic chemotherapy template

24 Journey Forward: Survivorship Care Plan Initiative A collaboration with: WellPoint UCLA Cancer Survivorship Center National Coalition for Cancer Survivorship (NCCS) Genentech

25 Survivorship Care Plan Builder Free, downloadable tool To be used by oncologists To create custom, post-treatment care plans for cancer survivors in 5 quick steps

26 Step 1: Enter general contact info Step 2: Enter diagnosis & background info

27 Step 3: Describe treatment plan Step 4: Summarize actual treatment

28 Step 5: Set follow-up care schedule Further customize your patient s survivorship care plan with: Guidelines for follow-up care and testing A list of symptoms to watch for Info on potential late effects of treatment A directory of support resources

29 The Survivorship Care Plan can be The Survivorship Care Plan can be printed, saved, edited or ed.

30 UCLA-LIVESTRONG Survivorship Center of Excellence: Testing Models of Survivorship Care UCLA

31 UCLA-LIVESTRONG Survivorship Center of Excellence LAF funding facilitates development and coordination of translational clinical programs that t will improve survivorship care At UCLA Medical Center Among our community collaborators In the community and region at-large Our focus is the development/evaluation of diverse models of cancer survivorship health care delivery

32 Health Care Partners Medical Group

33 Fully accredited, full-service, 376 bed, nonprofit community medical center. The South Bay s first hospital, founded in 1971 Highest recognition in the community for quality and state-of-the-art t th t medical services in a 2004 survey conducted by National Research Corporation. Selected as a Top 100 U.S. Hospital (2004, Solucient). Accredited by the American College of Surgeons Cancer Program Hospital cancer registry, with 1300 incident cases/year Physicians at Health Care Partners Medical Group admit to TMMC

34 A 377-bed-state-of-the-art County facility built in 1987 In 1992, Olive View incorporated UCLA in its name becoming Olive View-UCLA Medical Center In May 1997, Olive View-UCLA Medical Center became a part of ValleyCare, a healthcare delivery system for the north San Fernando Valley, Los Angeles County Department of Health Services

35 Where are we now at UCLA Medical Center?

36 VITA stands for... Vital Information and Tailored Assessment The VITA Program is the clinical arm of UCLA-LIVESTRONG Survivorship COE

37 Key Patient Care Activities Survivorship Consultations and Care Plans for Adult Survivors of Cancer Long-term follow-up clinic for childhood cancer survivors Adult Survivors of Childhood Cancer: Consultations and Coordination of Care Symptom Management in Cancer Survivors

38 and UCLA Medical Center Best in California

39 Shared-Care Model Focus on use of the treatment summary and survivorship care plan to coordinate care with PCP Empower patients by giving them a copy of the treatment summary so that they can share with other providers

40 When does long-term survivorship begin? Definitional problems should should it begin at the moment of diagnosis when treatment decisions are being made? The eye is in the beholder for some patients t and providers, it is only many years later, or after some of the late effects are apparent Problem of labeling

41 Survivorship Health Care Delivery Ganz s Three P s Ps of Survivor Care Palliation Prevention Health Promotion

42 Symptom Management/Palliative Care: An Integral Part of Survivorship Care Definition of Palliative Care: Medical care or treatment that concentrates on reducing the severity of disease symptoms (particularly if there is not a curative medical treatment) Goal is to prevent and relieve suffering and to improve QOL for people facing complex illness Focus on the most severe and prolonged symptoms

43 Common Palliative Care Concerns Pain Fatigue Depression Physical limitations it ti Cognitive changes Lymphedema Sexual dysfunction Menopause related symptoms Body Image

44 Consultant Specialists Required Mental health Pain management Physical medicine/vocational rehab Endocrinology Cardiology Gynecology/fertility Pulmonary Neurology/neuropsychology

45 Prevention Systematic ongoing follow-up required for screening Goal: early detection and early intervention for potentially serious late-onset complications e.g., g, cataracts, osteoporosis, cardiac disease Chemoprevention when available Life style modification to prevent second cancers

46 Health Promotion Health promotion counseling Goal: promote risk reduction for health problems that commonly present during adulthood ( esp. for childhood cancer survivors) Avoid weight gain Increase physical activity Avoidance of exposures that are harmful Decrease risk of other chronic diseases, e.g. diabetes, heart disease

47 Cancer Care Trajectory Cancer-Free Survival Start Here Recurrence/ Second Cancer Treatment t With Medical Outcomes Intent to Cure and Quality of Life Diagnosis and Staging Safer therapies Survivor health care delivery: Palliation, Prevention and Health Promotion Risk assessment and intervention at diagnosis

48 The mission of the UCLA-LIVESTRONG Survivorship Center of Excellence is to facilitate improvements in the quality of life and quality of care of cancer survivors in the Los Angeles region and wherever they may reside. American Cancer Society, ca 1988